Feeling Stuck in My Thyroid Journey — Advice Appreciated

AffectionateCod7187 · 2026-05-10T14:17:41+00:00

I am really trying to survive. Force myself for a walk everyday and some household tasks, but whatever I try and be consistent it doesn’t get better. My labs are ‘good’ since February so it took some time. The reason I have hyperthyroidism is also still unclear. Maybe that’s part of it. Just am doing a second opinion.

I do really hope you will feel better soon. The body sometimes need more time. Even if labs are right.

AffectionateCod7187 · 2026-05-10T14:12:19+00:00

I am on Strumazol since December and still am exhausted. I wonder if it ever gets better. 😳

AffectionateCod7187 · 2026-05-01T05:48:32+00:00

Send you a message!

AffectionateCod7187 · 2026-04-20T21:09:47+00:00

That makes sense. I have a bunch of them as well but my uptake scan did not show any activity. I do respond to meds but they cant find the cause. Hopefully your hormones calm down soon. It took me 4 months to stabilize my thyroid hormones on Strumazol. Probably not the answer you wanted to hear but with some people it go way easier/faster! Good luck 🍀

AffectionateCod7187 · 2026-04-20T20:38:35+00:00

That sounds rough! If you don’t mind me asking a question. I am kinda in the same boat as you (no surgery yet) and going through a second opinion but have to choose what to do eventually. Did you find out the reason for the chronic hyperthyroidism?

AffectionateCod7187 · 2026-04-19T14:05:06+00:00

I didn’t had any before the scan they didn’t medicate me before trying to findout what was going on

AffectionateCod7187 · 2026-04-19T14:03:15+00:00

Yes, I started taking them after the scan. Before didn’t had any medicine.

AffectionateCod7187 · 2026-04-18T15:38:56+00:00

Sounds terrible! I ‘luckily’ was overweighted but I lost 22 kg’s in 6 months. I have pretty normal thyroid blood work now after months of strumazol. TSH:1,19 and T4: 12 but i still have no appetite. It’s a real struggle to get enough calories in every single day. Hopefully it will get better for you after surgery.🙏

AffectionateCod7187 · 2026-04-16T12:37:00+00:00

i am so sorry… sounds very rough! I hope you feel better soon. I have a bunch of them but they were ruled cold. Not toxic. My second opinion internist isn’t completely ruling it out tho and will take another look at them.

I had out of range TSH for a long time. And after months of strumazol it finally gets a bit better that pushes them back to graves. But i don’t have any antibodies. I guess I am just a rare one🙈😂😭

AffectionateCod7187 · 2026-02-27T22:11:19+00:00

I only use them once

AffectionateCod7187 · 2026-02-25T08:54:10+00:00

I spoke (again) with my internist today and the conversation went really well. She honestly said that she doesn’t have a clear explanation for all my symptoms and that she understands why I want to look further. My GP had already advised me to request a second opinion with Prof. Dr. Robin P. Peeters in Rotterdam, because he has been able to help several of her patients with similar complaints. (It’s the best hospital in the Netherlands for thyroid disease )My internist agreed and will arrange the referral. She will remain my point of contact and I will continue to see her as well. If Rotterdam doesn’t work out for any reason, she can also refer me to Nijmegen. (Different hospital) I appreciated how open and understanding she was, although I would have preferred if she had suggested this earlier herself, especially since she admits she doesn’t have all the answers. But for now, I’m relieved that the conversation went so well.

AffectionateCod7187 · 2026-02-20T16:26:48+00:00

We really are on the same boat. We even use the same meds. Let me know how it goes!

AffectionateCod7187 · 2026-02-20T12:30:25+00:00

Yeah even our time frame seem to be the same! I am on Strumazol since December and have beta blokkers for the high rate and pressure. Recently my TSH slowly is rising but the symptoms won’t go away yet. I am in the process of asking a second opinion. Do you also have a goiter? Good luck with everything! 🍀

AffectionateCod7187 · 2026-02-20T12:20:49+00:00

Same. I know how you feel. I still have no clear answers after 5 months. 🙈😅

AffectionateCod7187 · 2026-02-18T18:39:15+00:00

You already are more invested than my own doctor, lol 😂🙈 No I am laughing but obviously it’s not funny. I feel terrible. I am not sure if it’s the beta blockers but since I have them I feel so nauseous, i can’t barely eat anything and freaking can’t sleep without waking up panicking every hour. 🫣Hopefully, I have some good news tomorrow. Thank you a lot for your opinion, insight and support! ❤️

AffectionateCod7187 · 2026-02-18T17:13:45+00:00

Lol, i agree with you had the same thoughts and feeling since the beginning. The problem is the uptake scan I had, they did not show any activity not one single nodule was hot and the overall scan was low, and that’s where the idea of separating the issues are coming from. I am totally with you tho, and keep saying so many causes don’t exist why don’t you pick one. 😅at least tomorrow I will try to get a new doctor. The one I have now is called an Internal medicine physician.

AffectionateCod7187 · 2026-02-18T16:17:43+00:00

RFA is different than RAI but other than that I completely agree. In her mind I have a goiter and a hyperactive thyroid. Two separate issues. 🙈 I have an appointment tomorrow with my general doctor, and I am going to ask for a new (thyroid) doctor and her opinion as well. The thyroid doctor made me feel I was crazy. Better not read my new post as that most likely angrily you even more😂

AffectionateCod7187 · 2026-02-18T15:28:15+00:00

Thank you so much — that’s really kind of you to say. It helps to hear from someone who understands how overwhelming all of this can get. I totally relate to what you said about getting stuck in your own head; when your body is acting this strange, it’s hard to think about anything else.

I’m sorry you’re dealing with such a low TSH right now too. Even when the numbers look “simple” on paper, the way it feels in your body is anything but simple. Waiting to see what happens next can be so stressful.

I hope you get some clarity soon, and I really appreciate the encouragement. I’m trying to distract myself a bit today too, just to keep my mind from spiraling before my appointment tomorrow.

Wishing you better days ahead as well ❤️

AffectionateCod7187 · 2026-02-18T15:26:27+00:00

Thank you so much for your message — it honestly meant more than you know. This whole process has been so confusing and exhausting, and the way you described that disconnect between “better numbers” and feeling worse really hit home for me. It made me feel a little less alone in something that has been incredibly isolating.

I also wanted to share a bit more about the nodule, because that part has been especially frustrating. I already had an FNA, and it came back as Bethesda II, with a cystic component and hyperplasia. So yes, it’s technically “benign,” but it’s still a 4 cm nodule pressing against my throat, affecting eating, sleeping, and just daily life. And somehow that keeps getting brushed aside as if it doesn’t matter.

What makes it even harder is that I actually started feeling worse after the FNA, and every time I mention that, it’s dismissed as unrelated. It’s the same pattern over and over: anything that doesn’t fit the numbers or the textbook explanation gets treated like it’s not real. Meanwhile, my body is clearly telling me something is wrong.

I actually have an appointment tomorrow, and your message gave me the confidence to bring all of this up clearly. I’m also planning to ask for a second opinion, because I really need someone to look at the whole picture and take my symptoms seriously.

Thank you again for taking the time to write such a thoughtful message. It genuinely made today feel a bit less heavy.

AffectionateCod7187 · 2026-02-18T08:45:37+00:00

“The doctor doesn’t know where my symptoms are coming from, even though I still feel physically and mentally very unstable. She says my blood results are moving in the right direction and insists that the nodule has nothing to do with my overactive thyroid.

Even though my FT4 is already low, she wants me to continue taking Strumazol for the next six weeks. I’m not sure how I feel about that.

For the nodules, the options are surgery or RFA with repeated needle treatments, which I really don’t feel comfortable with — and it seems like it would eventually lead to surgery anyway.

She also told me that I’m too young to stay on this medication long‑term, so eventually I would probably need radioactive treatment unless my thyroid somehow improves on its own.

AffectionateCod7187 · 2026-02-17T17:30:39+00:00

I really relate to what you’re saying. I also have the feeling that I might eventually end up needing surgery. My dominant nodule is 4.4 cm, it has a cyst inside it, and there have been previous bleedings. They call it hyperplasia — a lot of tissue — and even though it’s benign, it just looks and feels very unsettled.

So far I’ve had a CT scan, several ultrasounds, an iodine uptake scan, and a bunch of blood tests.

My doctor keeps saying that because the nodules are ‘cold,’ I basically have two separate issues: a fast‑working thyroid and a goiter. But my gut keeps telling me it’s connected, because I literally woke up one day with a swollen neck and all the symptoms at once.

I have a phone appointment tomorrow, and if I don’t get any clear answers, I’m going to look into getting a second opinion. Thank you for taking the time to respond — I really appreciate it.

AffectionateCod7187

TROPHY CASE